Friday, November 6, 2009

ME/CFS unfiltered

A little over a week ago, Atlanta Unfiltered ran a brief story about the Centers for Disease Control and its role in ME/CFS research:

A possible research breakthrough — the discovery of a correlation between CFS and a retrovirus related to the AIDS virus — has fired up the medical community in recent weeks. “This is going to create an avalanche of subsequent studies,” Dr. William Schaffner, an infectious disease expert at Vanderbilt University, told the New York Times this month.

But will the Centers for Disease Control and Prevention play a role in that research? It hasn’t so far. Advocates have been pushing the Atlanta-based CDC for years to fund outside research into a possible viral explanation for the debilitating disease, which afflicts as many as 1 million Americans — maybe more.

The full article succinctly outlines the specific criticisms. If you're unfamiliar with the long saga of the CDC and ME/CFS, this will give you a quick grasp of the basics.

Something that struck me about the story was that I'd never seen it reported by the news media before. There exists a very well-researched book, a documentary, and numerous websites/blogs on the subject, but conventional newspapers and magazines haven't touched it.

Comments are overwhelmingly positive and still coming in. Many can be summarized, "Thanks for being the first to tell everybody else what we already know."

Now, here's what really got me.

One of the commenters suggested further avenues of investigation that Atlanta Filtered should pursue. Editor Jim Walls replied:

I plan to work on a few more stories (next priority would seem to be the blood supply), but I gotta make a living and have been distracted by work for which I am actually paid.

I had to read that a couple of times before the full meaning sunk in.

There’s a certain poetic symmetry at work here. After the CDC ignores and denies the true nature of ME/CFS for decades, they’re shown up by an institute that hasn’t existed long enough to have its own building. After the mainstream media fails to pick up on this story for decades, it’s scooped by a newspaper that can’t afford to pay its reporters.